Saturday, January 11, 2014

Courage

Since I've started writing, some people have come to me with questions or their own medical stories. These both gut me to the core and fill me with so much awe for human resilience. I'm going to share a couple, without any personal details just to give you an idea. Please understand that when I talk about these, it's my interpretation and any wrong facts are my fault alone. Also, my mom has a master's degree in special education, and, being her daughter I've seen first hand some of the most incredible things. Incredible in both the amazingly beautiful and the amazingly ignorant form of the word. More on that later.

I have a friend who was diagnosed in their teens with Bipolar disease. For literally a decade they fought both the medications and all the social and psychological ramifications of having this disease. The medications are severe, I'm not going to sugar coat it. They can also add complications to other disorders or medications (like many heavy meds). My friend is now finding out that it might have been a misdiagnosis the whole time. It turns out that Hashimoto's Hypothyroid (sound familiar?) runs in their family, as well as other auto immune diseases on both sides of their family. Lythium, one of the medications, can affect Thyroid levels as well as other things. This person's TSH (a Thyroid blood lab) has been increasing over the years on the medication and THEY, not the doctors, the patient was the one to catch it. What do you even say in a situation like that. "Whoops"? A decade. An effing decade of misdiagnosis. So. Stupid. They don't deserve this. No one deserves this. The individual is now doing their own research to find the medical care they need to get their symptoms under control. This is one of my biggest pet peeves. When you're a teen not only do you have no legal rights but you don't have the independence to undertake this journey alone. You're completely at the mercy of the doctors and your families, and I pray to God that those individuals will do their jobs to protect you. It doesn't always happen, with or without the best of intentions and it's the teens and children who suffer from it. When we're in our mid to late twenties we've had enough experience and we have the capabilities to take things under our own control, legally, financially, medically. No one can hold us against our will and no one can prescribe medical treatment we don't want. Patient advocacy is a growing field that is so vital. Someone needs to speak up for the patients and for their families so that they don't get lost in a system that more often than not sees them as a bar-code instead of as a person.

I was gutted when I found out about this. In one way it would have been easier if I'd been the only one who'd had an experience of this kind. Years of misdiagnosis and disbelief. Every time I hear about a similar story it breaks my heart. I know how much you question your own conviction over the years, how much it shakes your core to be told over and over the symptoms are nothing. You need a counselor. It's growing pains. You're just an anxious woman. It's happening over and over again, to women of any age, to children and teens. What do they teach in med school, that it's ok to disbelieve someone because you, oh holy doctor, are so much higher above them? I guarantee if we were to look, you would bleed the same blood. Your chemical makeup is the same. You cry the same tears. The excuses are wearing thin.

Another story I have to share, is about a very young woman that my mom worked with. She has a very rare seizure disorder. When I met her she was three. She'd had over a hundred "stat" seizures. What I mean by that is that her family had to call 911 because of the severity of her seizures. She had hundreds of "blink-out" seizures, I'm sorry I really don't have a clinical name for them. Basically what happened was she'd literally blink, almost fall and catch herself and that would be the extent of her seizure. Another problem was her body wouldn't snap out of the seizures like typical patients do. There was one time she had an eight hour seizure. I hadn't met her yet but I remember how upset mom was. Mom and the patient's family thought they were going to lose her. Mom had to tell the doctors she was still seizing. The right side of her body was normal but the entire left side was locked. The problem was they'd already tried so many medications to try to stop the seizures that it became a balancing act. She had what I think of as seizure storms in her brain, imagine a thunder storm in a cloud. Because of this, the surgical procedure of removing a portion of the brain to stop the seizures wasn't an option; they were never localized.

Eventually she was diagnosed with Dravet Syndrome in New York.There's a serious danger with these children. They have full blown seizures, but their little bodies aren't meant to handle the amount of medication needed to stop the seizures. The hazard is either their hearts will stop or their brains will succumb to the trauma. Every time her caretakers had to give her the seizure medication, they would then have to call 911 in case her heart stopped and they had to resuscitate her. She was so used to this that when she heard sirens she'd assume they were for her and she'd go to the window to see if the paramedics were at the door. The first time I saw this I had to go to my room because I didn't want her to see me cry. If the children with this disease can make it the ages of seven to eleven, they're thought to have a chance. The fire department at her town knew her and loved her so much that they ran in a phalanx formation around her at the Epilepsy 5K every year while her mom ran with her in the stroller.

Another problem with Dravet Syndrome is that it's so rare, none of the medications are approved by the FDA. It's not lucrative enough to merit funding. What this means then, is that no insurance company will cover the costs for the medication. This is why the disease is so dangerous. Not many families can afford to pay face value costs for medications from Europe or Canada. I know for a fact that mine wouldn't have been able to. This is why so many of the children with Dravet die early. Either they're given too much medication and their bodies succumb or their families can't afford to keep paying their medical costs and have to let the children fight the seizures as best they can on their own. As more of these stories are coming out, there are organizations being formed to help patients find resources but it's not enough. With my girl, she was very fortunate. Her parents are wealthy enough to be able to cover the costs of her medications and ambulance trips. If they hadn't been, her story would have been very different.

Eventually, after my mom had been working with her for about a year, she felt she was stable enough to come to our house, and that's when I started working with her. My girl has the brightest smile, she lives every day with so much joy. She loves to be outdoors, to dance, to play. Despite everything she's never bitter. There were times she was sad, of course there were times. But she has too much love to dwell on it, and it's something we can all learn from.

She knew when her seizures were coming, and there was one time she kept saying, "I don't want it, I don't want it." And she started crying. My mom had trained my sister and I on what to do if she had a seizure so that we could have one person help her and one call 911 and wait for the paramedics. That day I held her in my arms while mom talked to the operator. Her seizure started and we gave her the medicine and I held her the whole time. I kept telling her, "I'm here sweetheart. Kim's here and Connie's here. You're not alone. We're here with you and we love you with our whole hearts." The paramedics came and tried telling mom she couldn't come in the ambulance. I remember laughing at her reaction, "Oh yes I am and you are not stopping me." My sweet girl snapped out of the seizure on the ride to the hospital, and her mom and I were there waiting. One of the firemen had given her a helmet that she was wearing. She said, "Sorry, kids." when she saw the stricken looks on our faces and when I hugged her she said, "Thanks, Kim". Of course, I started crying. I'll remember that day til I die. This one small girl facing the terror of her own Hell with more courage and love than I'd ever seen before.

She had a seizure every eight days if she was lucky, if not they were more frequent. Every big seizure scrambled her speaking and reading skills. I don't know how many times mom taught and retaught her how to read and speak. She'd get so frustrated because she knew the information was there if she could just find it. My mom found out that her signing skills were untouched by the seizures and that became my girl's outlet, she even taught me some signs. That and dance. She decided watching me dance and dancing with me was the most special thing. Her favorite thing to do was spin. Well, that and steal my pointe shoes and teddy bears to take home.

I want you to take a moment. If you couldn't trust your brain to retain information as vital as expression and communication, what would you do? If you fought your body for your life every week, if we lived with that kind of courage what could we do? Please think about others. These children, these teens, these patients without age or gender are fighting so hard just for the right to their own bodies, to their own lives. Stop thinking for a minute about ambitions, vacations, parties, texts, sex and money. Just for a minute. Consider them. Consider their battles.

Do you get where I'm coming from? These patients need a voice. They need to know that they're not alone, and I don't have the slightest idea where to start addressing the problem. Regardless, it needs to be addressed. And I'm not going to stop until I know I've changed the process, made it better for people. I need help. I want to give these people someone who gives a damn, who's listening and taking them seriously. I'll do what it takes, I don't care. Do I need to go from med school to med school sharing these stories and staring the students down til they're intimidated sufficiently? Probably wouldn't be the best plan. Do I need to write to every Senator, every Representative we've elected and the President? Go and talk to them about it? Seriously. I'll go. I was a delegate. I'm not intimidated easily, it's one of my biggest faults. This issue is so big and I don't know where to start, but I'm taking it on the second I'm out of rehab, and I'm starting to plan and network for it now. Please give me ideas, I'll take any.

Revamping

As of this week we're revamping my cardiac rehab regimen and adding exercises in physical therapy. We're finally getting to the point where I'm comfortable. Not to the point where I can push as much as I used to, but we're getting close!

The new goal in cardiac rehab is to get me doing as much on the treadmill as I can without symptoms, and the second I start getting tired or dizzy to go back to the upright bike. I got up to fifteen minutes in the last session, which pretty much means every time I've tried the treadmill I've lasted five minutes longer than the last time (walking). That's pretty good, compared to where I was when I started. And I'm sweating again!!! I know that's a strange and slightly creepy thing for me to be shouting about. Sorry. I have no boundaries, seriously. The reason I'm excited about it is it means my autonomic nervous system is finally getting back to doing what it's supposed to do. (Regulate heartbeat, produce sweat to regulate internal and external temperatures, keep me generally alive-sembling....kidding. Kind of.) Which means the nerve is getting retrained, which means Mr. Levine who came up with this protocol deserves a very big thank you. And a medal. Where do you go to get medals made? I feel like I should know this kind of thing. Something to look into.

The feisty is coming back too. Feels good.

In physical therapy we're focusing on my shoulders for now, since they're the joints that are slipping the most. I'm at the lowest intensity level (but up to two whole pounds in weights! Yeah man!) and my muscles are sore for a normal, healthy reason for the first time in, oh, years. I missed it! I missed the burn of a good workout, where your legs are shaky from running, not from your autonomic nervous system or some other nervous system eating you. That's how I imagine it at least. When I'm bored my over active imagination comes into play and I picture what my body's doing to me. And then I get mad, which is when I stop and find something distracting to do. It'll be a really good thing when I go back to school, or work at least so I have something to do besides rehab and pt. Bored and overactive imagination create some interesting scenarios. Maybe I'll start writing scripts like my mom suggests. It'd give me something to do besides writing my senators and sharing my health story in no uncertain terms. Hee.

I've heard it said that true best friends can go months without seeing each other and pick up like nothing happened. I'm lucky enough to have friends like these, and I value you more than I could ever say. I know if I email you, no matter where you are or what you're doing you'll get back to me and you know it's the same with me. You'll have a sassy, encouraging, sarcastic thing to say about whatever's going on. Missing you feels like a piece of me is gone, but picturing you kicking ass and owning the scene makes me smile.

"St. Jude, pray for us."

I'm not a Catholic, but he's the patron saint of hopeless causes and more often than not, they're the ones worth fighting for.

Thursday, January 2, 2014

New Beginnings

It may seem kind of convenient that I'm reaching this new phase in treatment just in time for the new year, and I'll try not to get ahead of myself (or beat up on myself) and see it for what it is: just the next phase.

Since I'm starting to get more views with every post and from other countries, I'll start this post with a small recap of everything. I'm a twenty four year old woman living in Colorado. I was diagnosed with Celiac on my thirteenth birthday after about a year of stomach issues (and all of the early signs, now that we know them all haha. I was a preemie baby, my mom had to dress me in doll clothes when I was born, baby clothes fell off. Also, I have super sensitive skin and my eyelashes fall out sometimes.) I got false diagnoses of a bunch of different auto immune diseases growing up, my joints were always hypermobile to a kind of nasty degree but doctors called it growing pains and said that of course I was flexible, I was a dancer. Since they didn't know what to do with me I kind of ignored it (great advice, not.) My PCP found Hashimoto's Hypothyroid disease when I was eighteen, so I went years thinking those two were my only illnesses.

I danced for eighteen years (imagine how fun it is to do the Nutcracker with no eyelashes. Yay, falsies!) before that career ended with a spine injury. Turns out my hypermobile joints were actually caused by a genetic illness that I'll talk about more later. I had an ankle surgery at eighteen because my right ankle overextended and a ligament got stuck in the joint when it came back in. My spine injury was a lot more complicated, I had two bulging disks at the base of my spine (L4-L5 and L5-S1), possibly due to the same issue or overuse from dance. I had an injury in dance class where the disks herniated, my right lat muscle tore and my L4 vertebra broke. It was nasty. I kept having issues after endoscopic injections and when they did a CT scan they found my L5-S1 disk was cutting into my spinal cord and I needed surgery a week later, on my brother's birthday. It's always birthdays or holidays with me, I swear.

It took me a while to figure out what to do with my life without dance in the picture. I changed majors probably about five times a semester before I moved back to Colorado for a change in scenery, and to get back to school and figure everything out. That plan got derailed when I started getting really sick out of nowhere. It started with sharp stomach pain and I couldn't keep anything down and months later (on New Year's last year) I found out it was Gastroparesis. Right when we found that out I started having new symptoms, I had tremors in both arms and both legs and random times, I started having balance issues (this was important because of the career in dance. Before then, I'd never in my life passed out or had balance issues. Ever.) blacking out all the time, and my muscle strength went from really high to nothing. I was absolutely terrified. I don't let go of control easily in regards to my own life. After nine neurologists did a million and one tests to prove themselves right (which failed, by the way. Naturally if they can't find the answer it's because the "girl" is lying for attention. I'll skip the bad language that this makes me want to use.) my mom and I gave up and went to the Cleveland Clinic. We were in Cleveland for a week and every doctor's visit was a test or a diagnosis. They took twelve tubes of blood (I have small veins. It took a while.) and I finally got my answer, twelve years after my bout with diagnoses of lifelong illnesses started.

In total I have Celiac, Hashimoto's, Gastroparesis, Ehlers-Danlos and Postural Orthostatic Tachycardia Syndrome. I've been in Cardiac Rehab for my POTS for about two months now, trying to retrain the nerve connections between my brain and heart to get things back to normal. Until my team at CR was satisfied, meaning I could handle standing and exercising without my heart going past 130 (it likes to go a lot higher) I was banned from physical therapy to keep everything from spiraling downward again. Ehlers-Danlos (at least the type I have) is a genetic disorder that means collagen production is smaller in me, so my joints aren't as protected, so they'll bend at bad angles and potentially dislocate. My doctors think that doing dance and pilates for years saved my little white ass in this aspect, it kept my joints limber and strong, protecting them from injury. It's been three years now since I've taken serious dance classes and my joints have gotten really deconditioned. I was hoping I didn't injure something on accident before I was allowed back into pt to get everything strong again but hey, this is me we're talking about! I was sleeping and my right shoulder subluxed (don't ask me how, I have no idea. No, as my doctor asked, I wasn't wrestling or anything, just sleeping.) and I need about a month of pt to try and prevent surgery. (Let's skip the cutting into me and letting my multiple diseases try to eat me alive. We just calmed them down.)

But that (finally, sorry I'm bad at "short" anything when it comes to writing. It's why I'm going into script writing as my new major haha. I can write for days.) brings me to my news! I'm cleared for pt as long as I do it sitting down on a mat or yoga ball. Hah. Hey, I'll take it! We're going to focus on my shoulders at first and see where we need to take it from there. But I'm really excited:) I think this is another turning point, and I'm very fond of those lovely moments in recovery. It's a step forward.

I might even get to go back to work again soon! Keep your fingers crossed for me? I'm just so happy to start retraining, even if it's at a slower pace. I'm comfortable retraining muscles and joints, still unsure about the whole retraining nerves thing.

I know it's New Year's and I know a lot of people do resolutions, and I'm seriously not trying to say they're bad. I think anything that motivates you to be stronger, kinder, more successful, happier, healthier, whatever is great. Use it. In my life, things change on a dime and I mean that literally. Spine injury, diseases onset, disease diagnoses, it happens in an instant. Maybe more people need life changing events, I just hope they're, you know, happy ones. Not....you know. You can lose or win everything in the blink of an eye, we can't control our destinies. Take the punches as they come and try to be the best, kindest, most sympathetic person you can be when you come out the other end. Don't judge. It never does either side any good. (It also pisses off little Scots women like me. We may be small but we're loud and feisty. You've been warned.) I can't make long term goals because I'm still not at a point where I trust my health to stay a constant to allow me any kind of plans. Of course I plan to finish my degree and be as successful and epic as I can be in my own field, and I want that for all of you, too. But I'm still taking things moment to moment and I feel like I'm walking on thin ice. I'm out of the water but not on solid land yet.

I think everything in my life was leading to this. This was meant to be, even though I don't have a clue why right now. Surprisingly, with people telling me over and over I was faking it and just fine, my self confidence has grown to be so much stronger than it ever was before. It's a little counter-intuitive. I won't play the puppet game and I sure as hell am done looking back. This is a new year. It's going to be better. I've gotten stronger and I'm getting stronger every day. I didn't give up, even though there were months that I wanted to. Real life and the business world is going to be cake compared to fighting for my life for a year a half, more when you add in the rehab and physical therapy time. I won't be letting anything get in my way anymore, including myself. Somehow in accepting my fears and giving them names, I overcame them all. I almost feel bad for the competition, almost.